A collaborative Patient and Public Involvement project to develop a new intervention for severe CFS/ME

Talk Code: 
Clare McDermott
lare McDermott, Sarah Frossell, Hilly Raphael, Caroline Eyles, Geraldine Leydon, George Lewith
Author institutions: 
Primary Care and Population Sciences University of Southampton, Rebuilding Your Life Project


Chronic Fatigue Syndrome/ME (CFS/ME) is characterised by debilitating fatigue, pain and other symptoms. Severe CFS/ME can lead to patients becoming housebound or bedridden. There is little research on interventions for severe CFS/ME. Patient and public involvement (PPI) is increasingly recognized as an valuable resource within research. We wished to explore the possibility of designing a new intervention based on patient experiences of improvement or recovery. This PPI project set out to answer the specific question;‘Can the experiences of those who have recovered/improved from Chronic Fatigue Syndrome/ME (CFS/ME) be used to design a new intervention for severe CFS/ME?’


A peer researcher (CM), lead facilitator (SF) and a retired GP specialist hospital practitioner worked with over 40 current and recovered patients and carers to explore recovery/improvement strategies for Chronic Fatigue Syndrome/ME. This novel approach was conducted as series of five PPI groups over 2.5 years. Each of the five PPI groups met for six sessions at approximately fortnightly intervals with expert facilitation from an experienced coach/facilitator.


A series of five PPI groups explored and identified a range of recovery/improvement self-help strategies in CFS/ME. This led to the design of a new intervention for severe CFS/ME, based on contributors’ first-hand experiences of getting better from the illness.


This project has led to a current National Institute of Health Research funded feasibility study designed to find out whether the intervention can help CFS/ME patients within a National Health Service setting (due for completion later this year). The innovative PPI design approach explored within this project offers a new possibilities for helping people with CFS/ME. It could be potentially be applied to other long term complex health conditions.

Submitted by: 
Clare McDermott
Funding acknowledgement: 
The project was initially unfunded, with everyone (researchers, clinicians, those with current or previous CFS/ME and carers) contributing their time pro bono. As the project progressed the Dorset ME Support Group kindly provided funding to cover travel costs, room hire and other expenses. However, most of the work on the project was conducted for free throughout.